Where do the parties stand on Rare Diseases Funding

Where do the parties stand on
Rare Diseases Funding leading up to Election
2017?For the last
several months the NZPN Board has been working SO HARD
lobbying MPs and candidates contesting the upcoming NZ
General Election.

We asked each and every person
these 3 questions:1. If elected in this upcoming
General Election, will you support Pompe Disease patients by
pressing for PHARMAC to fund the treatment?
2. Will you apply your voice and vote
in Parliament to ensure sufficient funds are available for
PHARMAC to approve the funding of
Myozyme?3. Do you think, in a first
world country like New Zealand, medicines for fatal diseases
should be withheld from sufferers?

These are the
stances of each party that replied:

Labour
Party - David Clark, Labour's policy of
establishing a rare diseases fund would include Pompe
disease. We acknowledge that the Pharmac model does not
provide for those with rare diseases. This fund would have
consumer representatives on the committee so the need for
medications to treat Pompe disease would be clearly
outlined. And I would be very keen to advocate on your
behalf if I were elected to represent you. Please feel free
to get in touch again if you would like further
clarification.

NZ First - We have
committed to two things, we understand the system is not
working and hence we have called for a review of Pharmac’s
funding policy. Secondly, I quote from Ria Bonds (Health
spokespersons NZF) “New Zealand First will set up a
separate pharmaceutical fund for sufferers of rare diseases
to be administered separate to PHARMAC.” That was
yesterday in an interview with nzdoctor.co.nz – I see you
have been quoted there recently too. Keep up the good
work.

As the last answer, we need both a review of
Pharmac funding policy and a separate fund for such
diseases.

No, definitely not - medicines should not be
withheld for fatal diseases.

National
Party - Jonathon Coleman, Dear Ms LockOn behalf
of Hon Dr Jonathan Coleman, Minister of Health, thank you
for your email of 6 August 2017 with a letter from the New
Zealand Pompe Network. The Minister has noted your
comments and advises that there is no further update on this
matter since his last correspondence of 30 May 2017.
Thank you for writing.

TOP - Because
of cost I can understand why Pharmac is hesitate in funding
this treatment.

The Opportunities Party Healthcare policy
is yet to be released however our world class health system
faces many challenges going forward and our priority is to
focus on prevention and to get the most out of our health
spending. Therefore in principle we support the Pharmac
model. In view of this response and to answer your question
I would like to advocate for your Pompe Disease patients in
any way we can however we will not be interfering with the
current Pharmac model and decision making
processes.

Regarding your question on ensuring sufficient
funds are available for Pharmac to approve funding this is a
challenging question as there is only finite funding
available with increasing demand for funding. Mental health,
teen suicide, elective surgeries and chronic illness
management all require additional funding with DHB’s
resources already stretched and in deficit. TOP would
like to apply the Pharmac funding model to other areas of
health spending as an independent funder with a strong
mandate to invest in cost effectiveness to provide the best
possible public health care to the most people possible. We
believe that if our approach was implemented we would see
more money going into funding cost effective drugs over
time, but mental health and primary care are likely to be
the first cab off the rank for extra funding.

To answer
your third question personally this is the most difficult to
answer from a health professionals point of view and again I
empathise with your position we would love to be able to
fund all essential treatments required for all New
Zealanders. This is why the Opportunities Party is focused
on addressing our inequality and poverty through changing NZ
Super and introducing a UBI to invest in struggling
families, reforming asset tax to change how tax is collected
and improving productivity in our economy with the view of
increasing our standard of living. This will eventually
allow us to invest more in improving our publicly funded
health care system.

Greens - We have deep
concern for any patient who can’t access treatment.
However, our preferred solution isn’t for politicians to
decide on individual medicines. The Pharmac system isn’t
perfect but it buys the most drugs at the best price to
provide for the largest number of New Zealanders; it is
reasonably free of political interference, and it needs to
stay that way.

We do support a separate fund for people
with rare disorders, to be allocated according to need
(rather than Pharmac's current criteria). This fund should
make use of Pharmac's negotiating and purchasing leverage
but decisions should be made independently.Overall
funding for pharmaceutical access is inadequate to meet the
cost of new medicines with potential benefits. National have
a history of doing just enough without solving the bigger
problem. This includes the latest injection of money in
Budget 2017. We would fund the pharmaceutical budget at a
higher level to help clear the backlog of recommended
medicines.

The Green Party supports, and will protect, the
independence of Pharmac to ensure that it can prioritise the
public benefit. We will ensure cost/benefit analyses take
into account the full economic cost of ill health, such as
unemployment and inability to do unpaid work, when assessing
the costs and benefits of a drug and investigate issues
around the patenting of medications including the length of
patents and the effect this has on the availability of these
medicines to New Zealanders.

We do not support political
interference in Pharmac decision-making, but do believe that
DHBs need sufficiently good quality information about the
health gain from both pharmaceutical and non-pharmaceutical
interventions to be able to allocate an appropriate amount
into Pharmac's budget for community pharmaceuticals.

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